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Narcolepsy

PureLife

PureLife

Bluelighter
Joined
Oct 18, 2005
Messages
2,659
Location
New Jersey
So for the past two months I have continually fallen asleep during the day, despite a goods nights rest. I'm in a partial hospitalization program and they referred me to sleep center because the sleeping at random times and dreaming is not only affecting my treatment at the facility, but I now pose a danger to myself.

I mean this is simply embarrassing. I'll be talking in mid group and my head will drop back and I'll start dreaming. Like I have the hallucinatory dreams that collide with reality. So I'll start talking gibberish to you and now even realize it. I've fallen asleep standing up, writing, and smoking. Smoking is was scars me because I drop my cigarette and don't even realize it for a few minutes. Thank god for the shitty safety paper. I was drinking water the other day and mid sip i fell asleep. I choked on the water and then tossed the bottle around the card. I was sleeping during all of this. This sucks. Does anyone else have it? What treatment has worked for you? I go monday for full testing to get a full diagnoses.
 
Provigil (modafinil) is an excellent drug for narcolepsy. It is a "wakefulness promoter" and is used to treat narcolepsy. You'll have to have a full diagnosis before they prescribe it, because its still super expensive (and won't come in a generic form in the US until 2012.) Some people might reccomend the foreign (indian) pharmacy generic modafinil brands but having taken the brand-name Cephalon Provigil and then several different overseas generics, there was a DEFINITE difference.

Other treatment strategies include amphetamines, which is less than ideal since narcolepsy requires life-long treatment.
 
A friend of mine has Narcolepsey and he was on amphetamines for awhile. I'm not sure if he is still on them or if he is on something else now, or if he even takes any meds for it now?

Since you're going to a sleep center at a hospital can you talk to a doctor there about treatment and medications?
 
^ Yeah once I know what is going on for sure, treatment options if any would be the next course of action. I'm not too keen on the idea of being on amphetamines for an extended period of time so hopefully there's other variables.
 
I've heard Desoxyn is a perfect idea to combat Narcolepsy, it's actually why it is often prescribed. I can imagine it must be frustrating, just keep searching until you find something that works for you. Good luck.
 
Xyrem (pharm GHB) is also on-label for narcolepsy. If you have a choice of treatment options, I'd suggest trying out modafinil, as it is the most physically benign of the three to take regularly. Hope it works for you.

ebola
 
^ I would told about Xyrem though a previous doctor. Though it seems beneficial is very costly. Since its not widely used only one pharm company makes it ( Off hand it said Jazz pharm. on wiki) so it's not cheap even with insurance I believe. It's also extremely heavy regulated even to patients. I don't know their system for keeping an on eye on it though.
 
I can't imagine how much narcolepsy sucks if ghb-induced sleep is supposed to be a remedy.. sleeping on g never made me feel rested.

I would definitely go for modafinil first.
 
No, I don't, so maybe I was being a little forward.. From what I've read modafinil seems to be safe with few side-effects.. GHB, in my opinion gives the crappiest sleep ever, it makes me feel physically and mentally drained.
 
I was on Providual..not sure if I spelled that right...very expensive even with insurance so doctor changed me to adderal
 
Do you have any experience with modafinil?
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I do, but only clandestine use to make up for sleep-deprivation, sans narcolepsy. It rules!!!one in closely resembling having been fully rested. Or it could be thought of as caffeine with any physiological or anxiogenic effects removed.

ebola
 
I don't see why you don't use an extended release amphetamine. Cheaper and proven effective, more fun, but I have not tried Modafinil.
 
I'll posit that it is because taking amphetamine every day is not healthy for most people.
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Narcolepsy is a life long condition. I had a friend and their family member was on Dexedrine consistently since the early 70's. Well to put it short their not... all there. But they are on a high dose (80mg+ daily). The other thing is that I do have problems with Addiction AND I'm on a drug court program. Though they couldn't say "no" to me taking any kind of medications since their not doctors. I would just rather not be prescribed an amphetamine at this time. Maybe if my conditioned worsened and I ran out of options.
 
PureLife said:
Narcolepsy is a life long condition. I had a friend and their family member was on Dexedrine consistently since the early 70's. Well to put it short their not... all there. But they are on a high dose (80mg+ daily). The other thing is that I do have problems with Addiction AND I'm on a drug court program. Though they couldn't say "no" to me taking any kind of medications since their not doctors. I would just rather not be prescribed an amphetamine at this time. Maybe if my conditioned worsened and I ran out of options.
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I think you're definitely on the right track here. Its just not a good long-term solution for all the reasons you listed above. Even starting at a low dose, tolerance builds over time and requires increases.

I think provigil would be a great option for you, and US generics will be super cheap after 2012, making for a good long-term solution.

Cephalon is making "Nuvigil" (armodafinil) to take the place of Provigil as a money maker, but don't be fooled. It is nearly the same medication, and doesn't hold any benefits over modafinil except, Cephalon claims, a longer action (which they haven't even clinically tested, they're just going off of plasma concentrations.)
 
PureLife said:
Narcolepsy is a life long condition. I had a friend and their family member was on Dexedrine consistently since the early 70's. Well to put it short their not... all there. But they are on a high dose (80mg+ daily). The other thing is that I do have problems with Addiction AND I'm on a drug court program. Though they couldn't say "no" to me taking any kind of medications since their not doctors. I would just rather not be prescribed an amphetamine at this time. Maybe if my conditioned worsened and I ran out of options.
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Why not be prescribed/use several things at one time? Sometimes you may need it, same way my doctor asked you're outtta Xanax right? Want some? I was like sure, I don't think I need it but its nice to have.

Your logic is reasonable and sound, but I stand by my statement, or rather stupid opinion you don't agree with. Nicotine patches help me if you haven't tried those yet. I used to be just like you before I started Adderall, I don't care anymore though.
 
^ I understand where your coming from. I would def. WANT medication for this problem, no doubt about that. I'm just not to keen on stimulants I suppose. It would be helpful to have some kind of amphetamine around though incase things were to get out of control.
 
I'd like to try adderall - I fall asleep at work... Narcolepsy falls on me like a spell I can't break free of. I don't have episodes where I'll go out real abruptly... More like a spell or strong feelings if sedation. I've fallen asleep driving - I have moderate to strong daytime sleepiness and I've also experienced sleep paralysis for years. Is adderall something that can help me with the daytime sleepiness issues? I'm interested to try it because I am so fatigued every day :C. Does anyone have any ideas on how I can get my doctor to let me try adderall?
 
Stims get ripped on way too much imo. They are very effective for quite a few things and are relatively safe. There's just a really big stigma because they're abused.

For example: why did they ever develop Strattera (atomoxetine) for adhd? For the money, sure. But why are they able to sell it? Because it's not a stim. Who cares that it's unsafe and has a shitload of sides? I'm not saying stims are harmless but you gotta see things in perspective.
 
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